A visit to the House of Lords to participate in a briefing session for proposed amendments to the Children and Families Bill
by Steven, Jane and Tristan Marshall representing AYME
After a traumatic 05.00am start to the day, we caught the 06.25 from our local station in Whittlesford, just outside Cambridge, in good time to meet Mary-Jane, AYME's CEO, at the coffee shop in the Palace of Westminster (Having never visited before, all I can say is "palace by name, palace by nature"!). We had a much needed coffee before heading off through the historic Westminster Hall to Parliament's central lobby where TV interviewers like to 'nab' unsuspecting politicians for their comments on a hot topic live on air.
From here you can see the chamber of the House of Lords on the right, seating upholstered in a regal crimson and the chamber of the House of Commons on the left, with upholstery in a much more modest green. All however, are emblazoned with Parliament's portcullis motif. Then it's onwards, up a grand staircase, the eyes of former prime ministers, preserved in marble and bronze, following every step, to Briefing Room 5 on the first floor of the parliament building - a modest, yet still imposing and slightly intimidating room with magnificent views overlooking the river Thames.
The briefing session was arranged by the Health Conditions in Schools Alliance to raise awareness within the House of our collective concerns regarding the proposed Children and Families Bill and our support for the amendments tabled by Lord Storey. The representative of which helped us create our invaluable DIY name badges prior to the arrival of the Peers.
Five peers, quite a scoop by all accounts, attended the briefing session; Lord Ramsbotham, Lord Walton of Detchant (a staggeringly sprightly 92 year old Peer), Baroness Brinton, Baroness Howe, and Baroness Holins' chief researcher, Claudia Camden-Smith, the Baroness herself being unable to attend due to a prior commitment. All five Peers were knowledgeable (particularly Lord Walton who, with a background in Neurology, had a real working understanding of CFS/ME - something of a rarity) and supportive both of the basic principles required of the bill and our need to make sure they got it right.
Tristan spoke confidently and eloquently to each of the Peers and managed to get several key points across:
* The need for the integration of children and young people back into their peer groups following a prolonged period of illness to be both positive and productive.
* The need for education, health, and social welfare professionals to receive targeted advice when they need it and from people who know the condition.
* The need for training and support to be delivered effectively and in a timely manner.
* The need to ensure best practice is followed at the time, each time, every time.
It was interesting to listen to children and young people with conditions other than CFS/ME and learn that they too face many of the problems and prejudices we do, particularly the need for health, education, and social welfare professionals to communicate and act co-operatively. This is something we, as a family, had not previously considered. It is a situation which probably gives weight to the argument that a collective voice may stand a better chance of being heard and being able to instigate change.
Gratifyingly, the Peers not only took on board Tristan's comments and concerns but put forward suggestions as to how they might be overcome in practice.
Lord Ramsbotham suggested use of the existing, but little recognised and under- utilised, Health and Wellbeing Boards. This draws together the Departments of Health, Education and Social Welfare, as a conduit to ensure all three departments work in concert for each and every child, irrespective of their condition and geographical location, to ensure the right care and support is both made available and delivered.
Lord Walton emphasised the need for well documented, quality research to underpin the care and support packages designed for specific conditions, particularly those which are less understood and stigmatised as a consequence.
Baroness Brinton suggested a dual sign post/flag pole system whereby any education, health, or social welfare professional with concerns about a child can readily access information and support on a 'one stop' basis (the sign post), confident that once concerns have been raised a minimum standard of care and support coordinated between each department will automatically ensue (the flag pole).
If the bill gives those with CFS/ME and their families entitlements enshrined in law and places a burden of responsibility upon the departments of health, education and social welfare to both communicate and act co-operatively to ensure a minimum standard of care is delivered each time, every time, it will represent a major breakthrough for AYME and the CFS/ME sufferers and the families they represent.
It remains a cause for concern that the bill does not specifically refer to CFS/ME in the list of 'medical conditions' referred to in the bill and we should redouble our efforts to ensure that it does.